Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey.

Lotte Haverman,Heleen Maurice-Stam,Marion AJ van Rossum,Taco W Kuijpers,Hedy A van Oers,Martha A Grootenhuis

doi:10.1186/1546-0096-12-34

Abstract

BackgroundA chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA.MethodsParents of all JIA patients (0–18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi2, Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses.Results155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV.ConclusionThe HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.

Highlights

A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child
This study shows that the Health Related Quality of Life (HRQOL) of parents of a child with JIA was comparable to the HRQOL of parents of healthy children
Parents of a child with JIA with active arthritis perceived their child overall as more vulnerable compared with parents of a child with JIA without arthritis, as indicated by the total score for perceived vulnerability. They think more often that their child seems less healthy than other children. These findings suggest an influence of disease activity on parental perceptions of child vulnerability

Summary

Introduction

A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Juvenile Idiopathic Arthritis (JIA) is arthritis of unknown etiology that starts before the age of sixteen. It is one of the most common rheumatic diseases in childhood and a major cause of childhood disability. Children suffering from JIA experience functional impairment due to manifestations of the disease in one or more joints, morning stiffness and fatigue [2]. Children with JIA are more functionally disabled and experience more pain than healthy children, especially children with the diagnosis of JIA and active arthritis [1,3]. There is no definite cure for JIA: treatment is aimed at controlling pain and achieving inactive disease by means of medication [1]

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